#DBlogWeek ’15 – Day 4 – Bottles and cans

I started writing this post a week before the DBlogWeek topics were posted, and never finished. Since today’s topic is Changes, this seems like as good a time as any to finish it. The grammar-freak in me, however, weeps over allowing the lede to this post to end in a preposition, a choice that makes me feel like soy un perdidor.

Where it’s at

I’ve been contemplating my role in the Diabetes Social-media Space lately. Many topics of conversation just don’t seem to engage me like they used to. The stories seem to be ones those that I’ve hear before; the campaigns tend to focus more on breadth than depth; and the fluffy pieces seem to be light on substance.

There definitely is a need for familiar stories – it helps others to relate and validate their own experiences.

There definitely is a place for campaigns – it helps to rein people in, get folks involved, and if the audience is right – to make a change.

There definitely is a role for fluff – it’s comforting and uplifting to read. The feel-good stories can turn a frown upside down.

But I’m just not feeling it.

Maybe my time in Diabetes Social Media has run its course. After all, most of the people who led the diabetes-space when I first got involved have either toned-down their activity or abandoned it altogether, making space for a new generation of voices to earn their rise to DOC-prominence.

So why shouldn’t I expect the same of myself? Doesn’t the natural order of things lead me to seek a change of role, of scenery, or of purpose? Is it just human nature to become bored or dissatisfied with our place in life and to seek change?

It’s not that I don’t care anymore. I do.

It’s just that I’m looking to move on. I’m looking to move on from talking about the way things are or the way things ought to be…

…to doing something about it.

I’ve got two turntables and a microphone

You may recall that I was invited to an Advocates’ Forum some time ago that was hosted by Medtronic (and, in absentia, Bayer). It’s the only diabetes event to which I’ve ever been invited as an all-expenses-paid guest. Being categorized as an “advocate” troubled me, as I’ve written before.

Recently, there was another forum, called Heal the VoicesHealth e-Voices, which was held practically in my front yard. It was centered around using electronic media to connect and advocate for people of many different chronic conditions, not just diabetes. I wasn’t invited. Though it was disappointing to miss out on the social aspect of the forum, the purpose really wasn’t one that suited me.

That’s not to say that forums aren’t effective. When I think back to that Medtronic event, there is one moment that remains more vivid and powerful than any other. It wasn’t on the agenda, wasn’t rehearsed, and wasn’t even staged by our hosts.

In the midst of an interaction of which I can’t quite remember, the snarky self-proclaimed “Perfect Diabetic”, better known as Christel – author of The Perfect D Blog – suddenly found herself imbued with a profound sense of energy that embraced everyone in the room. She walked around to each person in an emotional and passionate display that I can’t begin to accurately retell, expressing a particular unique, desirable, and much-needed trait about themselves. In fact, her exact words to each individual began “I need you for your…”, followed by a word such as Heart, Perspective, Creativity, Compassion. I’ll bet everyone in that room remembers their own unique identifying word. I sure do. (In retrospect, I wonder if the idea for the unConference was beginning to percolate at that moment.)

I was needed for my brain, and I’ve been thinking a lot about that lately. Philosophically, that is. I’ve pondered how I can contribute to the world in a real, meaningful manner that not only benefits others, but could fill my soul and own feeling of self-worth.

Oftentimes, others can see in us what we have difficulty seeing in ourselves. Oftentimes, people tell me that “I Can” when I think “I Can’t”. This is one such instance.

All this time, I’ve been using my microphone that is this blog to pump out diabetes-themed lyrics, letting somebody else develop and control the machinery that makes my D-world spin. (A case of “He’s the DJ, I’m the rapper?)

Well, I think my talents may be better put towards those two turntables and less on the microphone. That behind-the-scenes role may not be as glamorous as being a front-man, but it’s no less important.

I don’t do too well with psychology, but I’ve been thinking a lot about the tangible ways to make our D-lives better. I’m thinking Healthcare, Devices, Regulation, Charity.

I’ve been thinking about how to develop an insulin pump that breaks the current model of being an “all-inclusive system” top-of-the-line model. I’ve been thinking of a new paradigm (lowercase “p”, not the trademarked brand) that is designed around regulatory approvals, flexibility, and upgradeability – and of course the entire interface (visual, audible, tactile, emotional) with the PWD who uses it.

Imagine changing your CGM or your blood glucose meter while retaining the ability for either to talk to your existing pump. Imagine converting your pump from tubed- to tubeless (pod-like) operation – and back again – depending on your social calendar or other life events. All of this is built around the same pump, which achieves regulatory approval — independent of the add-ons that may not have even been developed yet. These are the solutions that are taking form in my brain.

Kill the headlights, and put it in neutral

But it’s risky – venturing into the unknown.

And I’m wondering if pursuit of the dream is a waste of time. Traditional insulin pumps are rapidly becoming “old technology” as closed-loop systems – or maybe even something like smart-insulin or Afrezza – become the wave of the future. With six established companies in the US insulin-pump market (Medtronic, Animas, Insulet, Asante, Tandem, Roche) is there really room for more, or have we reached a saturation point where only the strongest will survive?

This is the change that I’m thinking about. Not just about the dream, but about how to make it happen. I’ve got a technology-concept in mind, but I can’t go at it myself. I don’t have the entrepreneurial skills to do it myself, nor do I have an adequate network of contacts to do it with someone else.

But I’m trying to work on that. (Slowly.) Maybe this blog will help (Somehow).

There has to be a way to change the dream into reality. It’s been done before. Even by the very person who complimented me on my cranium, then went on to found her own 501(c)(3) charitable organization.

Though I’m completely chickenshit when it comes to trying new things, everyone to whom I’ve mentioned this dream says I should go for it. Though I need to keep my day-job to provide for myself and my family, I can’t neglect the calling that continues to get louder and louder. Somehow I need to learn how to make that change.

Because

There’s a fire, starting in my heart.
Reaching a fever pitch, and it’s bringing me out the dark.

Just about crying now! Sad for myself, excited for you! I have missed your frequent posts this past year. I will miss you if you go away. But, you have to do what is best for you while hopefully helping some others along the way. While your blog has helped me immensely, you have to put yourself first, You have to take care of your needs, first. Here’s to hoping taking care of your needs leads to better things for those we love with D!

Thanks Marcia! This is all about dreams that I hope to make work, though. I have no idea that it’ll really happen or not. Perhaps my way of getting noticed is via lots of posts on this blog. Who knows?

Scary. Inspiring. Thoughtful. Sad. Exhilarating. Challenging. I could go on and on with adjectives. I hope you find your way on this adventure and maybe all of us will end up being the beneficiary of what you discover. I do hope that you are not totally closing the door on the DOC. At the same time I don’t know how many of us can do this forever. But I suppose you should be thinking of not closing this door but opening another one. That’s pretty wonderful.

Thanks Kelley. I don’t think self-employment is the way to go; I can’t see myself as the next Asante or Tandem. But perhaps I can develop some great ideas, see what’s involved to patent them, and then try to license them out to the existing guys. Just an idea, and there’s no guarantee they’ll want it, though. As I mentioned, conventional pumps may be becoming a dying breed.

Well, on second thought, I *don’t* want to become the next Asante. Tonight’s news proves just how tough the market is. Also, there are now a bunch of ingenuity-filled ex-Asante free agents on the market against whom I can’t possibly compete.

So, yeah. I’m WAAAAY overdue in reading and responding to this. Like, way more overdue than I’m comfy with. But anyhow, here’s what is on my brain: I feel the same in some ways. That while the energy and passion are encouraging and always commendable, I do often wonder if it’s the same conversation being replayed in different settings and not ever really going anywhere. You can’t knock the “me too” moments and peer support/connections — that’s what is at the heart of the DOC and how many of us found our way here. That is a powerful thing, one that I don’t think companies know how to deal with because they are often just trying to grab onto that feeling and power to use it for their own purposes. Not always, but often. I like all the stories, even if they don’t resonate or inspire me, simply because it’s great to see people using their voices and connecting. That’s also a downfall, of having so many voices that are frequently saying the same things. I know, I’m grateful to know you and have the chance to hear what you’re thinking and going through in the D-world. And for all you do in “advocating,” whether it’s meant to be that or not. Many times I’ve read your posts and thought “me too,” but more importantly it’s helped me get a handle on how I think and feel about something. That’s important for me, and I appreciate it more than typed comments can express. So whether you’re spinning the vinyl or rapping into the mic yourself, THANK YOU for stepping up and saying what you are.

One more note, relating to your pump dream — if memory serves (which it may not), I think that universal pump design is something Tandem is working on with its so-called Project Odyssey. And I think that’s the main reason behind it’s “no upgrade” policy, in order to go for future software updates and a universal design that doesn’t require actual hardware changes.

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